On the Ambiguity of Autism

June 16, 2014

This is an excerpt from a paper I wrote for a Rhetorical Theory class. I am not an expert on Autism; nor do I claim to be one. However, as the mother of four children-three of whom are on the Austism spectrum, these are things I often think about.

As the mother of three children on the Autism Spectrum, I am acutely aware of all of the terms associated with developmental disabilities. There are the legal terms, the educational terms, the derogatory terms, and the politically correct terms. All of these terms are an attempt to give meaning to something which people do not understand.

I still struggle with whether or not my own sons truly fit in the category of “autism.” All three of my sons displayed signs of the disorder when they were two years old. I took them to conventional specialists and unconventional specialists. Every time yielded the same answer: “We just don’t know.” One of my children had chromosomal testing done and again, nothing was found. My oldest son received several different diagnoses, none of really explained anything or gave us any answers. When he was thirteen he was finally given a diagnosis of PDD-NOS, which is the abbreviation of “pervasive developmental disorder-not otherwise specified.” Essentially, it means that he has some characteristics of autism but not enough to even fit in the autism category. But no one else could figure out which category he belonged in, so he instead ended up being categorized as PDD-NOS.

I experienced a similar thing with my second oldest son; as I brought him to specialist after specialist in search of an answer. After a whole day of various tests at Children’s Hospital the conclusion was that he, too, did not fit neatly into any category. Instead, I was told that I could bring him back in a couple of years, and at that time, if he hadn’t made any progress, he “might” be given a diagnosis of “mental retardation.” In the meantime, he fit into no category. He fit into no category until he was eleven years old; when he was finally put into the category of autism.

He was also put in the category of DCD; which stands for developmental cognitive disability, more commonly known as mental retardation. From the time that had lapsed from the first evaluations (where the specialists could not come up with a diagnosis) the label “mental retardation” had acquired a rather negative connotation. Like many words, it had acquired a negative connotation and had become a derogatory term. Created in 1961 to replace older terms such as “feebleminded,” “idiocy,” and “mental sub normality,” (Medscape.com), it was removed as a label when, much like its predecessors, it became derogatory.

As far as the term “mental retardation” goes, I am uncertain whether or not this is a good or bad term. Because it does have such a negative connotation associated with it, it is hard to use the term without feeling like I am offending my own child-or myself, for that matter. There are constant campaigns going around that are attempting to ban the use of the “R” word. It is the word “retarded” that has become derogatory, and the word that has the primary focus. The fact that it has become a derogatory term is probably the reason why I was so upset when I was informed that my son “might” fit into this category.

If mental retardation-which when created was thought to be politically correct-is now a derogatory term then is it possible that autism could become a derogatory term? Perhaps it is possible. It is also possible that the term autism will shift to something entirely different. Even since the creation of the label in the 1940’s, the differentiation among the different types of autism-primarily Asperger’s, PDD-NOS, and Autism-has changed, and are now all blanketed under the term “Autism Spectrum Disorder.”

Part of the reasoning for the new blanketed term is that there is increasing awareness of autism and the symptoms are more recognizable. However, the chance of over diagnosing is still highly possible. Since it has been greatly theorized that most people are on the autism spectrum, many people now see the autism spectrum as a way to explain things about themselves that previously didn’t make sense. The rise in autism diagnoses is due in part to that increased awareness of autism. The signs are more recognizable than they previously were.

As a result of the increase in Autism awareness, more people are getting labeled as having autism, and many of these people are already adults. For an adult, the purpose for having the autism label takes on different meaning that it does for children. Chances are if an individual has made it to adulthood without needing extra services at school or in the community, then the autism is not severe. That is not to say that those adults did not struggle in school with academics or social interactions. Very often those individuals did struggle in school with social cues and struggled with concepts such as abstract thinking. However, individuals with autism can be very bright and therefore can and do thrive in the academic setting.

For an adult, the reasons why they might identify themselves as a person with Autism can take on a different meaning from the reasons that a child may be need to be diagnosed. For adults, perhaps it is more about never fitting in about a basic need to want to belong. In 2012 Benjamin Wallace wrote an article for NY Magazine, titled “Are You On It?” In the article, Wallace talks about the “epidemic” of autism diagnoses; and the reasons adults seek to have a label or diagnosis. People use the label for many reasons, including wondering why they are so obsessed about certain subjects. They use it to explain spouses who are rigid in their behaviors or friends who are stubborn in their ways. They use it to identify people.

My sons-at least my older two sons-had no clue that they were placed on the autism spectrum until very recently, and they are 17 and 19, respectively. Nothing was earth shattering about figuring out they were on the spectrum. Rather, they continued about life in the way the only way they knew how. My youngest son has yet to figure out that he has autism, and if he has, I wouldn’t know, because he has a limited vocabulary compared to most 10 year old boys.

It wouldn’t matter, anyways. On some level, my sons recognize they are different and struggle to fit in. This is part of the ambiguity of a diagnosis such as Autism. Some children on the spectrum are lost in their own little world with no concept of their surroundings. Some individuals on the spectrum find it hard to make friends and connect with others. Some individuals prefer solitary activities over the activities that force them to interact with other people. Other individuals don’t get the humor in jokes and have a hard time displaying emotion.

The reason why I mention these particular traits is because among my three sons, none of them have these traits. In my opinion, this is the problem with the label “autism spectrum.” The proverbial “spectrum” is so broad in itself that it can encompass a wide range of behaviors. Considering the relative newness of the autism diagnosis and the fact that the research on autism is ongoing and constantly evolving, there are constantly new things being discovered about a disorder that relatively speaking, is in its infant stages and still largely unknown.

As I have previously stated, it is the child that defines the autism, not the autism that defines the child. Individuals with autism still have personalities unique to them, and traits that define them, regardless of their label. My one son still loves the NY Yankees, my second oldest son still has a sense of humor, and my youngest son still loves photography. If anything, the autism has heightened their interest and allowed them to develop their strengths in ways that maybe they wouldn’t have had they not had the autism label.

My three sons’ personalities are certainly unique to them. This is the fascinating aspect of autism. Not only do the traits that they exhibit differ from each other, but the manner in which they exhibit them differs greatly. For example, one of the characteristics of autism is rigidity in routines. For my youngest son, this means going to the local convenience school every single morning for a stick of beef jerky. On the other hand, for my oldest son, it was speaking with a child-like voice. Despite the fact that his voice changed when he was sixteen or so, he continued to use a high pitched voice, because that is the way he had spoken all of his life. Then there is my second oldest son, who has no problem using his mature voice, but has to watch the same Disney cartoon every Saturday morning.

So I suppose this is the issue that I have with Autism and labels in general relating to developmental disorders. It seems paradoxical to categorize multiple people with one label that doesn’t identify their individual uniqueness. At the same time, how many variations could there possibly be? I believe as many variations as there are people with autism. Perhaps this is why they coined the term “autism spectrum.” It is possible that researchers recognized that there were too many variations to identify anybody by one definitive label, and so, they created a “spectrum.”

In the perfect world, individuals would be treated based on their behavioral characteristics alone, and not have a need for a label. It wouldn’t matter whether or not a person fit the “criteria” for a specific diagnosis. People would have the ability to modify their attitudes towards people different from them.

And even though there is increased awareness with autism, I think there is still the negative association when people hear the word autism. I know, and I’ve seen it. When I tell people that I have children with autism they most often look at me the same way; with a sympathetic look. For perhaps many people, maybe a look of sympathy doesn’t seem like it would have negative meaning. For people who are living a life with autism, sympathy seems more of an insult than anything else.

I believe the greatest reason why people have a need to label others is that people do not understand. They see things they don’t understand and don’t know how to make sense of it. With autism, there are many unknowns, and the unknown is very often a scary thing.

Instead of looking at autism as something that hinders my children, I would rather look at my children and recognize them for the individuals they are; and acknowledge their strengths as well as their limitations. For society, however, I know that this is not the reality, and it is not the truth. There is likely always going to be a negative stigma associated with autism, no matter how much awareness we have of the disorder. There is always going to be an attempt to demoralize these individuals and make the labels derogatory. `

I still believe that people ultimately are inherently good, and maybe there will come a time someday where labels are no longer needed. In the meantime, I will continue to label my children by the way that I see them; that is, awesome….or “AUSIM.”